Looking for comments about Jemperli/dostarlimab
I am a 73-year-old female, diagnosed with an aggressive form of endometrial cancer (EC), type IIIC1 dMMR. I had a complete hysterectomy last fall with no obvious signs of spread to nearby organs but did have one lymph node show microsized cancer cells. I've since received 7 infusions of Jemperli (6 infusions with paxitaxil and carboplatin) plus a single infusion alone of Jemperli. I also had 25 radiation sessions to the base of my pelvis. I am currently considered without disease but I am also aware that EC has a nasty habit of recurring. Recently, at what was to be my 8th Jemperli infusion, my doctors ultimately determined that I had developed complete cortisol insufficiency. In short, the Jemperli trashed my adrenal glands and I will have to take hydrocortisone for the rest of my life. Jemperli has many known side effects but I'm having difficulty determining if the side effects will continue to add up if I continue the immunotherapy. Does anyone have any information to share about this? TIA.
Comments
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I just wanted to say we are here for you. I had serous endometrial cancer 7 years ago with no recurrence so there is hope. I did not take those medications, but there are women here who have and I hope they comment. Did your doctors reduce the dose of the Jemperli? Some women here have said that is what they did when side effects were serious. I'm sorry to hear about your adrenal glands. Is it a rare side effect? At least it. is a a doable treatment. Hopefully others will comment soon. Zsazsa1 had a similar case to you. I don't know if she took Jemperli though. She is 7. years out too with no recurrence.
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Sorry to hear of your reaction to Jemperli. I am also on Jemperli for maintenance of serous carcinoma. I was originally diagnosed with carcinosarcoma a more aggressive form of endometrial cancer. Jemperli was included in my 9 infusions for chemo. Then I was moved to Jemperli alone for maintenance. First infusion was uneventful. A week after the 2nd infusion I developed a rash in a few spots on my body. The itching was so bad that I ended up in the ER. The dosage has since been reduced by 50% and infusion changed from every 6 weeks to 3 weeks. I just got it 6 days ago, with allergy drugs. Keeping my fingers crossed that there is no reaction.
To answer your question, not sure whether Jemperli has a cumulative side effect, however hopefully reducing the dosage by half might help hopefully.
Best of luck!
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Thank you for sharing your experience, abume. These newer drugs show positive results in clinical trials but there is still a lot of unknowns.
@KHoltgraver dMMR is one of the markers that have had a lot of response (positive) to the newer drugs, however, everyone is different and we all react differently. I'm not sure how members are using Jemperli but I hope they post to help educate all of us on how it is going.
Hugs ladies
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Jemperli was part of my frontline chemo treatment. I received 6 infusions, surgery then another 3. Then proceeded to maintenance on only Jemperli since April. Just had my first scan and unfortunately Jemperli did not work. The tumors grew and there was new growth. Will see my gyn onc on Tuesday for next steps.
Jemperli however does work for some people. I only wish I had checked on whether it was working for me, earlier than now....
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abume, sounds like you've had a rough time of it. Did your infusions also include chemo drugs? I had those lab tests prior to every infusion. The CA125 isn't always a definitive marker for uterine or ovarian cancer. It can also indicate inflammation. Mine was 19 before surgery and has hovered between 4 and 7. The 7 came when my body was about to go into adrenal crises.
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Forherself, I apologize. I just realized that I never responded to your comments. Thank you for commenting. Every little piece of information is helpful. My side effect is considered very rare and serious. The Jemperli caused my T-cells to attack my pituitary gland, specifically the area that tells the adrenal glands to do its job. My endocrinologist told me that adrenal function will not return and I could easily experience adrenal crisis (unconsciousness and potential death) if I don't or can't take the pills. This side effect showed up at my 7th infusion and was very scary. No appetite (and I mean zero. I had a difficult time forcing myself to eat, which is rare for me, lol.), my heart rate was well over 100, blood pressure 110/60, far lower than my normal). Fatigue so bad I could barely make it up the stairs. My 8th infusion is scheduled for this coming Thursday as they are 6 weeks apart, and I am loath to continue given the seriousness of the initial side effect. Most people on this thread experienced a rash and joint pain, which was resolved rather quickly with a reduced dose. Because the drug can cause damage months or years down the road, I am now very reluctant to continue. I'll let everyone know what I ultimately decide.
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Hi I'm new to this site. But I stumbled on your story, just a piece of it. Any hoot, it caught my attention, very much so, when you said adrenal gland and jemperli alone for maintenance. And now your on hydrocortisone because of jemperli. I went through the same thing. I was doing so well after my 6 rounds of chemo and some other stuff and jemperli was in that group. But by itself, my lord did it cause so much havoc
I was going backwards and I keep asking my Oncologist what is going on. Well after a couple times in the hospital me trying to get some answers to no avail. I said doctor can you do a tumor marker and a CT scan. Lord be hold, it was my adrenal gland. It's been a month now that I'm taking hydrocortisone.I see my Oncologist in two days to see what did he come up with. Thank you for sharing your story.
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Hi, I'm sorry to hear that you're going through this. It's no fun to discover you'll be cortisol dependent for life. Our side effect is considered rare. It was pretty bad before they figured that part out. My oncologist recognized the signs right away and sent me to an endocrinologist to get a better idea of my situation, and that helped. He's holding out hope that my adrenal gland will eventually come back on line, but that usually doesn't happen in these cases. My main concern has been whether the immunotherapy will continue to cause additional side effects. My oncologist said there is unfortunately no data on that and based on her experience, does not happen frequently but it does happen occasionally. I was ready to cease treatment but looking at data she provided from the second phase of the Ruby trial convinced me that the Jemperli conferred a much higher chance of being alive at the three-year mark (30% higher if you're a numbers person) so I decided to continue treatment. I'm due for my ninth treatment in a few weeks but I think it's now starting to cause arthritic pain in my hands and other joints. Good luck to you in your treatment and I hope you do better from now on.
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